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Whilst every effort has been made to ensure the accuracy of the information provided in this directory, we do not accept any responsibility or liability for any errors that have occurred. It is recommended that you always check with providers that their service or organisation meets your requirements. We offer an impartial service and we cannot recommend or endorse any providers listed.

Further information

Children's Cystic Fibrosis Team

The Children’s Cystic Fibrosis service is provided by a multi-disciplinary team made up of doctors, dieticians, nurses, physiotherapists, psychologists, a pharmacist, and a social worker. It is based at Southampton General Hospital and looks after all the children with Cystic Fibrosis in the area.

Who to contact

Contact Name
Katie Smith
Contact Position
Paediatric Cystic Fibrosis Social Worker
Telephone
02381 208973
E-mail
Katie.smith@uhs.nhs.uk

Where to go

Name
Paediatric Unit (G level, East Wing)
Address
Southampton Children's Hospital, University Hospital Southampton NHS Foundation Trust
Tremona Road
Southampton
Postcode
SO16 6YD
Children's Centre Areas
Coxford Shirley Warren Lordshill

Local Offer

Service Provider Extended Local Offer Response

What does your service do?

As a Children's multi-disciplinary Cystic Fibrosis Team, we provide high quality specialist care for children with cystic fibrosis. Our experienced, multi-disciplinary teams including consultants, specialist nurses, physiotherapists, social worker, psychologist, pharmacist and dietician provide state of the art care, in line with the most recent advances in cystic fibrosis care. We work closely with families, and provide frequent reviews to detect and treat early potential complications that can affect long term survival and quality of life.

We have excellent working relationships with our adult cystic fibrosis colleagues, which makes the transition from child to adult services as smooth as possible. We provide care for children from the point of diagnosis through to adult services, around about ages 18.

We are part of a large ongoing research programme. All of our patients have the opportunity to take part in local, national and international studies that aim to improve care for patients in future.

Children and families can access the specialist cystic fibrosis social worker for support around any social care issues which arise as a result of the child’s cystic fibrosis. This can include (but is not limited to) issues around education, housing, employment, carers support including young carers, safeguarding, benefits, access to grants, transition and compliance with treatment. The social worker can support families as in-patients and out-patients, within clinics, on the ward, home visits and liaison with other organisations.

Where is it located and what areas does it cover?

Our service is the regional centre based at Southampton Children’s Hospital at the General Hospital, and has a network of shared care clinics in district hospitals across the South England. This includes Poole, Swindon, Portsmouth, Isle of Wight, Yeovil, Dorchester, Salisbury, Winchester, and Basingstoke. We also share care for the children with cystic fibrosis living on the Channel Islands. This makes up the Wessex regional paediatric cystic fibrosis network. This way of working means we make the best use of local resources, while providing access to a full range of specialty services as needed by our patients and their families.

We provide full care for those children living within Southampton area and shared care for those living within the Wessex regional network.

The specialist cystic fibrosis social worker is based within the hospital but also provides community based support around the network.

Who does your service provide for?

Our service provides for children aged birth to 18 years who have a diagnosis of cystic fibrosis.

Children and their families who have non-medical related issues as a result of cystic fibrosis can be supported by the team’s social worker.

How can I start using the service?

You will be referred to our service via the Newborn screening service following diagnosis. If you move into our area, your specialist cystic fibrosis team should contact us to discuss your transfer. Alternatively, you can also self-refer via childrensCF@uhs.nhs.uk if you are already attending the CF service.

In order to access the social worker, you can speak to any member of the team or the social worker directly. You can email childrensCF@uhs.nhs.uk or call the social worker on 023 8120 8973.

How are decisions made about who can use your service?

Any child with a diagnosis of cystic fibrosis who lives within the boundaries of the South England (as listed above) is eligible to access the cystic fibrosis team.

Decisions about the child are made by the multi-disciplinary team. The team will communicate with you during clinics, on the wards, via letter and telephone.

Your referral will be responded to within one week if it is as a result of a new diagnosis of cystic fibrosis. If your child is already being looked after by another cystic fibrosis team and the referral is a transfer of care, then our response may take longer. This is because we will need to get all the information from your current cystic fibrosis team.

How do you communicate with service users and how are they involved in decision making/planning?

As a team, we see children and their parents/carers in clinic on a regular basis where there is an opportunity for discussion about planning and decision making. The views of the children and their parents/carers are always sought and taken into consideration when doing so.

Decisions about the child’s treatment and care may be discussed by the multi-disciplinary team within the team meeting. These are then fed back to the children and their parents/carers via letter, telephone or direct discussion.

The Children's multi-disciplinary Cystic Fibrosis Team facilitate parents evenings once a year.

Within the hospital, we have access to interpreters and can commission further support from outside communication agencies for written translation.

We are able to provide accessible information to anyone with a learning difficulty or disability.

Is your service fully accessible?

Our hospitals are always fully accessible for those with physical needs.

Visits from the social worker can also take place in the family home, or at a location convenient to you.

What training are the staff supporting children and young people with SEND had or are having?

Our team are specialists in caring for and working with children with Cystic Fibrosis. Our team is made up of consultants, specialist nurses, physiotherapists, social worker, psychologists, pharmacist and dieticians. Each professional has qualifications within their field.

All staff are subject to mandatory and statutory training overseen by the Trust.

We work closely with our colleague in the Adult Cystic Fibrosis Team who are also based at the Southampton General Hospital. We liaise with other cystic fibrosis centres across the country and the World to ensure that we learn from others to enable us to provide the best care to our patients.

How will I know my child will be safe using this service?

We are continuously monitored against targets and standards. Our performance information, such as key statistics and ratings, are published on this website and elsewhere (such as the Dr Foster website) as part of our commitment to these standards and our regulation by external bodies.

 

All social care and healthcare providers have to be registered with the Care Quality Commission (which replaced the Healthcare Commission), which assess hospital trusts on a series of measures and standards for patient care and management.

The CQC has regulatory and enforcement powers across all of health and social care in England. They are responsible for determining the standards we must achieve, they will inspect us periodically to check we are meeting those standards and by law, they have powers to close services if standards are not met.

All of the team are subject to the Disclosure and Barring Service (DBS checks). This Government service checks a person’s criminal record to ensure that they are safe to work with children.

How do I give feedback, make comments or raise concerns?

We would like to encourage our families to discuss any feedback, comments or concerns with the cystic fibrosis team in the first instance, contact information will be given to you during your initial appointment.

Any feedback, comments or concerns can also be sent via email to childrensCF@uhs.nhs.uk.

The University Hospital Southampton have some overarching methods for feedback. We'd like you to tell us about your experience at the hospital - it will help us know what we are doing right and where we might improve.

Your opinions, comments and ideas are important to us and do make a difference.

You can email your thoughts and ideas to yoursay@uhs.nhs.uk. Please note you should indicate in your email if your require contact regarding your feedback from the relevant department. You can telephone 023 8120 6325, or fill in the form on the Have your say leaflet and post it back to us.

If you are raising a concern or have an urgent enquiry that you would like us to respond to, please do not use this form but contact patient support services instead.

Patient support services

If you have any concerns or need advice, you should first contact local ward staff - ask for the ward sister or matron.

For further help you can then contact patient support services.

Ways to get in touch

  • Phone patient support services on 023 8120 6325.
  • Email us at patientsupportservices@uhs.nhs.uk.
  • Speak to the local ward staff and ask to be put in touch with patient support services.
  • Call in to the information point just inside the main entrance of Southampton General Hospital.
  • Write to us at the address below.

What patient support services can do

  • Advise and support patients, their families and carers
  • Provide information about NHS services
  • Listen to your concerns and suggestions
  • Help sort out problems quickly on your behalf

Out of hours

Patient support services is available 9am to 4pm, Monday to Friday. Out of hours there is an answer phone. If you have a problem that cannot wait until patient support services are available contact the duty manager for the hospital via a member of staff or through the hospital switchboard 023 8077 7222.

Address

Patient support services
C Level Centre Block
Mailpoint 81
Southampton General Hospital
Tremona Road
Southampton
SO16 6YD

Who can I contact for further information?

Call the team on 023 8120 8973 or email us at ChildrensCF@uhs.nhs.uk.

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